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Blood, 15 February 2008, Vol. 111, No. 4, pp. 1811-1815. Prepublished online as a Blood First Edition Paper on November 6, 2007; DOI 10.1182/blood-2007-07-102202. This Article Full Text Full Text (PDF) All Versions of this Article: blood-2007-07-102202v1 111/4/1811    most recent Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Rights and Permissions Citing Articles Citing Articles via HighWire Citing Articles via CrossRef Citing Articles via Google Scholar Google Scholar Articles by Plug, I. Articles by van der Bom, J. G. Search for Related Content PubMed PubMed Citation Articles by Plug, I. Articles by van der Bom, J. G. Related Collections Free Research Articles Clinical Trials and Observations Related Article in Blood Online Social Bookmarking                   What's this?  Previous Article  |  Table of Contents  |  Next Article  CLINICAL TRIALS AND OBSERVATIONS Social participation of patients with hemophilia in the Netherlands Iris Plug1, Marjolein Peters2, Eveline P. Mauser-Bunschoten3, Arja de Goede-Bolder4, Lily Heijnen3,5, Cees Smit6, José Willemse6, Frits R. Rosendaal1,7,8, and Johanna G. van der Bom1,3 1 Department of Clinical Epidemiology, Leiden University Medical Center, Leiden; 2 Academic Medical Center, Emma Children's Hospital, Amsterdam; 3 University Medical Center Utrecht, Hematology and Van Creveldkliniek, Utrecht; 4 Erasmus Medical Center, Sophia Children's Hospital, Rotterdam; 5 Rehabilitation Center "De Trappenberg," Huizen; 6 Netherlands Hemophilia Society, Badhoevedorp; 7 Einthoven Laboratory for Experimental Vascular Medicine, Leiden University Medical Center, Leiden; and 8 Department of Thrombosis and Hemostasis, Leiden University Medical Center, Leiden, the Netherlands The introduction of replacement therapy in the 1960s has improved medical and social circumstances gradually. The availability of prophylactic treatment has further increased the possibilities of a "normal" life for patients with hemophilia. We examined whether social participation and health-related quality of life (HRQol) of today's hemophilia patients differs from the general male population. There were a total of 721 participants in the Hemophilia in the Netherlands 5 study (HiN-5 study) ages 16 to 64 years. Patients with severe hemophilia participated less in full-time work compared with the general population. Occupational disability was reported by 35% of patients with severe hemophilia between ages 31 and 64 years, compared with 9% in the general population. HRQol of patients with severe hemophilia between ages 31 and 64 years was lower than of the general population. The differences with the general population in HRQol were least pronounced for patients between ages 16 and 30 years. Despite major improvements in treatment during the last decades, patients with hemophilia are still less involved in full-time paid work and suffer more from occupational disability than men from the general population. After the introduction of prophylactic treatment, the number of patients who are occupationally disabled is reduced. CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this? Related Article in Blood Online: Hemophilia lives: the impact of prophylaxis Louis M. Aledort Blood 2008 111: 1752-1753. [Full Text] [PDF] This article has been cited by other articles: B. Waters, M. Qadura, E. Burnett, R. Chegeni, A. Labelle, P. Thompson, C. Hough, and D. Lillicrap Anti-CD3 prevents factor VIII inhibitor development in hemophilia A mice by a regulatory CD4+CD25+-dependent mechanism and by shifting cytokine production to favor a Th1 response Blood, January 1, 2009; 113(1): 193 - 203. [Abstract] [Full Text] [PDF]

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